In a state of what to do

Mchapp
Mchapp Member Posts: 95
edited March 2014 in Colorectal Cancer #1
Sorry to bother you - but I am in a state of what to do.....and I just need another shoulder...not sure what rock to pick up and move and carry with me......(must be a rock theme today - just 4Brooks - love your rock painting idea)

While on radiation - and Xeloda - I began to have the foot tingles - on both feet....doesn't hurt, but is on the bottom of both feet and goes from toes to heels (bilaterally). when I had to go off the Xeloda for the 10 day due to level 3 diarrhea - it completely resolved....then the last 8 day with the Xeloda (reduced dosage) - it returned...same level in both feet...again - doesn't hurt - just annoying....

I have been finished with radiation and Xeloda since January 3...(one month off any treatment) - and the foot thing is still here...went today to finish the last 4 rounds of Folfox and Dr. Greenberg held the Oxalipltin because of this foot thing - she really thinks it could be a late side effect of the 8 rounds of Oxiplatin...I really thought it could be Xeloda - even though this is not a "true" side effect of Xeloda....It's not in my hands and the Oxaliplatin did have the tingling in my fingers when exposed to cold temps....so the foot tingling has me completely puzzled!!!

SO the rock -
do I compromise my feet (possibly for life)
or
do I compromise my chemo treatments and killing the questionable cancer cells and decrease the outcomes?

I am SO lost....I did get the leukovorin and 5-fu and she said we would re-evaluate in 2 weeks....my labs were excellent - and I feel really good...but just don't know what rock to choose....

Also found out that I am K-RAUS positive G12D mutation condon - so is there something else I need to do? Other genetic test negitive...and the 2 Pet ct's prior to radiation are still showing me ned. Reminder Stage llb, 0/93 lymph nodes, no mets in any other organs.....CEA level is .4....but didn't expect this "road block"..not sure what to do...

what would you do and which rock would up pick up and carry

Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #2
    Not sure what to say
    You seem to be between a rock and hard place.
    I wish I could offer you something better. I would try to do as many treatments as you can. I never did radiation or Xeloda but I did do the oxy 6 years ago. I still get tingly feet. Sometimes it's worse at night but it's been manageable.
    If it's a choice between feet and cancer coming back, I'd do all I could to prevent cancer from coming back.
    -phil
  • karguy
    karguy Member Posts: 1,020 Member
    #3
    When
    When I did xeloda,and radiation at the same time,my fingers went numb,and I was told to watch for problems with my feet.But I didn't have any problems with my feet.About a month after treatment ended,everything went back to normal.The radiation doctor was the one who checked me every week.Maybe you could ask that doctor,and see what they say.I hope this helps.
  • lizzydavis
    lizzydavis Member Posts: 893
    #4
    PhillieG said:

    Not sure what to say
    You seem to be between a rock and hard place.
    I wish I could offer you something better. I would try to do as many treatments as you can. I never did radiation or Xeloda but I did do the oxy 6 years ago. I still get tingly feet. Sometimes it's worse at night but it's been manageable.
    If it's a choice between feet and cancer coming back, I'd do all I could to prevent cancer from coming back.
    -phil

    Ask your onc about Alpha-Lipoic Acid...
    Hi. I am sorry you are having the problems with your feet. Ask Dr. Greenberg about Alpha-Lipoic Acid. I was part of a clinical trial by MD Anderson. Alpha-Lipoic Acid is available over the counter. I believe it helped me. My side-effects were minimal.

    Description/Intervention: The goal of this clinical research study is to test the effects (good and bad) of alpha-lipoic acid (ALA) in preventing peripheral neuropathy (abnormal, uncomfortable, often painful, sensations and feelings in hands or feet) caused by chemotherapy, as compared to the effect of a placebo. Researchers want to find out if this dietary supplement can help to decrease the symptoms as well.

    Ask Dr. Greenberg - it couldn't hurt to ask.
  • zenmonk
    zenmonk Member Posts: 198
    #5
    feet
    I have the same thing. Even though I stopped chemo a couple of months ago its still there. Feels like my feet are asleep all the time. My onc said it was nuerological damage from the oxalplatin. Not sure if it ever goes away. Myself, I dealt with all the side effects to make sure that I had played my best hand against the cancer first. The feet thing wont kill you, the cancer will try.
  • TxKayaker
    TxKayaker Member Posts: 176
    #6
    zenmonk said:

    feet
    I have the same thing. Even though I stopped chemo a couple of months ago its still there. Feels like my feet are asleep all the time. My onc said it was nuerological damage from the oxalplatin. Not sure if it ever goes away. Myself, I dealt with all the side effects to make sure that I had played my best hand against the cancer first. The feet thing wont kill you, the cancer will try.

    I completed my 12 rounds of
    I completed my 12 rounds of 5FU w/ Oxy last November and I still have the loss of feeling in my finger tips and the bottom of my feet but I can live with it. I'm hoping that this will diminish over time.
    Mike
  • sfmarie
    sfmarie Member Posts: 602
    #7
    Neurologist
    Perhaps a visit from a Neurologist would help?
  • lcarper2
    lcarper2 Member Posts: 635 Member
    #8
    sfmarie said:

    Neurologist
    Perhaps a visit from a Neurologist would help?

    feet
    I have been on Xeloda for 4 months now and have feet trouble also hands get real red and so do my feet they are asleep most of the time I am a very bad diabetic so I can't blame all of it on the chemo but I do take Gabapentin 300 mg 2x aday and get some better . I was told by my ONC that it is a perment condition.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #9
    lcarper2 said:

    feet
    I have been on Xeloda for 4 months now and have feet trouble also hands get real red and so do my feet they are asleep most of the time I am a very bad diabetic so I can't blame all of it on the chemo but I do take Gabapentin 300 mg 2x aday and get some better . I was told by my ONC that it is a perment condition.

    Tingling feet and fingers
    You know, when I think back and the feeling I was having about the neuropathy (nerve ending damage that causes the tingling sensation) I thought this is not good at all, how can I cope, etc. Then after the fact which is present day, I did 10 post op chemo treatments with oxaliplatin and 2 more without and only Leucouvorin and 5fu. The tingling in my fingers is almost gone completely and the feet especially in the fold between the toes and pads feel like Diane said, like they are packed with wet sand all the time. Great analogy !...But in retrospect I really wish that I could have finished the last 2 with the oxy, but I wussed out for the want to feel myself again. I made the choice to stop after 10 and cut out the oxy. Wise or not I made the choice and I will live with it right or wrong. But if I had it to do over I would have done all 12 with the oxy because I have learned to live with tingling feet...but that is a personal choice that is yours to make. Good luck in making it, whatever you choose will be right for you.......

    BTW, I am going on a year NED......Love and Hope to you my new friend, Buzzard
  • coloCan
    coloCan Member Posts: 1,944 Member
    #10
    Buzzard said:

    Tingling feet and fingers
    You know, when I think back and the feeling I was having about the neuropathy (nerve ending damage that causes the tingling sensation) I thought this is not good at all, how can I cope, etc. Then after the fact which is present day, I did 10 post op chemo treatments with oxaliplatin and 2 more without and only Leucouvorin and 5fu. The tingling in my fingers is almost gone completely and the feet especially in the fold between the toes and pads feel like Diane said, like they are packed with wet sand all the time. Great analogy !...But in retrospect I really wish that I could have finished the last 2 with the oxy, but I wussed out for the want to feel myself again. I made the choice to stop after 10 and cut out the oxy. Wise or not I made the choice and I will live with it right or wrong. But if I had it to do over I would have done all 12 with the oxy because I have learned to live with tingling feet...but that is a personal choice that is yours to make. Good luck in making it, whatever you choose will be right for you.......

    BTW, I am going on a year NED......Love and Hope to you my new friend, Buzzard

    Also had Xeloda with oxy and radiation
    prior to colostomy but didn't feel neuropathy in toes and soles of feet (or didn't notice it when it really began because of other consequences of treatment!!) until AFTER preop treatments ended. It got worse when postop FOLFOX began recently but I'd rather live with toes feeling like slabs of cement when I try wriggling them and funny numbness than live with cancer if thats my choice. The oxy is what really gets to me, tho,causing month-long postponement of treatment from Xmas to end of Jan this year and decision to withhold oxy from remaining 5 doses. Hopefully latter won';t impact too negatively but I couldn't take risk of another shaking/sweating/freezing/burning up attack-for lack of name for this (assuming anyone else had this reaction too)....steve
  • Mchapp
    Mchapp Member Posts: 95
    #11
    coloCan said:

    Also had Xeloda with oxy and radiation
    prior to colostomy but didn't feel neuropathy in toes and soles of feet (or didn't notice it when it really began because of other consequences of treatment!!) until AFTER preop treatments ended. It got worse when postop FOLFOX began recently but I'd rather live with toes feeling like slabs of cement when I try wriggling them and funny numbness than live with cancer if thats my choice. The oxy is what really gets to me, tho,causing month-long postponement of treatment from Xmas to end of Jan this year and decision to withhold oxy from remaining 5 doses. Hopefully latter won';t impact too negatively but I couldn't take risk of another shaking/sweating/freezing/burning up attack-for lack of name for this (assuming anyone else had this reaction too)....steve

    Called my friend who is a
    Called my friend who is a Radiation Oncologist in another state - he wrote this to me yesteday...I was in a really bad place last night - I am a very black and white person - this "gray" area is not my style.....
    "I’m sorry about the chemo toxicity and I think it is important to remember that there is practically no data looking at the number of cycles of chemotherapy and the likelihood of survival (it’s one of those wonders we often think about in radiation therapy) though there is clear data on the distinct increase in toxicity associated with higher doses of drug. Remember an important fact here Michelle; quantity of life is meanignless without quality. I’d discontinue drug if your toxicities are significant and I wouldn’t worry since your medical oncologist will not be able to quote you an absolute decrement in survival as a result of being able to complete most, if not all, of your chemo. Personally, I think they’re prescribing too much to you anyhow and I would agree that your negative nodes certainly predict for an excellent outcome. Smile and just say no thanks and be confident."
    I am in a better place today - and it's nice not to have the hand symptoms with cold today..
    Still have a week to make my choice and see which monkey rock to carry on my back
    I REALLY appreciate all of your comments - and I am weighing each of your personal expericences.
    This IS the best place to figure out what to do - I am glad I am a part of this wonderful networking group
    Thank you from the bottom of my heart.
    Michelle
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #12
    Mchapp said:

    Called my friend who is a
    Called my friend who is a Radiation Oncologist in another state - he wrote this to me yesteday...I was in a really bad place last night - I am a very black and white person - this "gray" area is not my style.....
    "I’m sorry about the chemo toxicity and I think it is important to remember that there is practically no data looking at the number of cycles of chemotherapy and the likelihood of survival (it’s one of those wonders we often think about in radiation therapy) though there is clear data on the distinct increase in toxicity associated with higher doses of drug. Remember an important fact here Michelle; quantity of life is meanignless without quality. I’d discontinue drug if your toxicities are significant and I wouldn’t worry since your medical oncologist will not be able to quote you an absolute decrement in survival as a result of being able to complete most, if not all, of your chemo. Personally, I think they’re prescribing too much to you anyhow and I would agree that your negative nodes certainly predict for an excellent outcome. Smile and just say no thanks and be confident."
    I am in a better place today - and it's nice not to have the hand symptoms with cold today..
    Still have a week to make my choice and see which monkey rock to carry on my back
    I REALLY appreciate all of your comments - and I am weighing each of your personal expericences.
    This IS the best place to figure out what to do - I am glad I am a part of this wonderful networking group
    Thank you from the bottom of my heart.
    Michelle

    One more thing just for chits and giggles
    My surgeon at Vanderbilt let me know that most oncologists will lowball a post op chemo treatment reoccurence percentage...Mine with no node involvement let me know that without the post op chemo I had a 65% chance of not reoccurring and with the post op chemo it raised it to 85%...He says that most Oncologists will only tell you it ups your chances of non reoccurrence only 5%...To me 5 or 15% is worth every ounce of the crao you will go through to finish treatments. But also remember this, you can quit them anytime, it may not have any effects on you, and it only takes one mutated cell getting loose......I simply did it for the ones that love me, I quit thinking of my own self after my daughter told me she didn't want me to die.....dammit , now here I go crying again.....Ok, Im sure you got the picture. I just want ya around for a long, long time..........Love Hope and Depends, Buzzard

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